Saturday, January 6, 2018

Another year in the books!

I haven't posted in a while so I have a lot of fun family updates.  First, Johnny finished his doctoral program and is now a doctor of engineering!  We are all very proud of him and looking forward to having more free time!  He's now trying to convince me to get a doctorate of education, but I haven't been convinced yet.  The idea of more school is not exactly appealing after the tough Fall I had with such a heavy work load.  I'm very happy to have such a busy project load, but I also look forward to a little less stress going into 2018!

Fall was filled with many activities including a music recital for Veteran's Day at the Morningside House in Leesburg.  Both kids are taking music lessons from Jessica and Reagan started taking voice lessons.  Both sang with their cousin Jacqueline (who also takes voice lessons from Jessica) and had a great time handing out cupcakes and talking with the residents at the retirement home after the recital.  One of the men was 99 years old!  And everyone liked the performance so much that all of Jessica's students were invited back in December for a Christmas recital and sing along!  And this time both sang solos!  So proud of them for having the courage to do that in front of so many people!

Both kids have also been participating in an after school running program twice a week for two months for an hour. The training ended with a 5K that all Loudoun County Elementary Schools ran together.  Running with the Stars was a lot of fun and I'm really proud of both of them for finishing the race.  They ran with several friends including their friend Hailey.

We followed tradition this year and decided to cut down our Christmas tree at Snickersgap Tree Farm in Bluemont.  As tradition holds, they fought over who got to drag the tree down the hill.  We still haven't perfected how they can share that task, but perhaps next year we'll craft a plan on the way there.  It has become a fun tradition that always ends with Reagan and I putting on the ornaments while the boys watch TV.  And this year we added a new tradition of ordering Chinese food after for dinner.  Sounds like a great tradition to me!

Reagan also got to attend The Nutcracker's Russian ballet this year at George Mason's Center for the Performing Arts! Johnny's dad bought tickets for her and her cousin Leah to go for the first time!  Her mom and I went along with Pop and Nana.  I wasn't sure if Reagan would stay engaged for two hours.  I took the kids to the Nutcracker three years ago at a local high school but that's nothing like the Russian ballet!  Reagan was truly mesmerized.  It was so fun seeing the amazement in her eyes.  Pop even bought tickets to have her picture with a ballerina and take home a nutcracker ornament.  I know she will cherish that for the rest of her life.  So much fun to expose her to culture at an early age.

We started the Christmas season with breakfast with Santa at River Creek Country Club with Johnny's family. The kids get very excited about our elves visiting each day, Fred and Rose.  But Reagan had to be convinced to sit on Santa's lap for the first time this year.  She claimed he wasn't the "real" Santa.  I know our years are numbered for the magic to still be alive...I never realized how quickly that is lost until I had children.

The good news is that they have younger cousins on one side so they can continue to "play along" even when they don't believe.  It is so different when they are the youngest versus their older cousins who get to carry on that magic so much longer!  Having kids has definitely brought the magic back for me over the last 8 years and I hope we can keep it alive a few more years!

We also surprised the kids with a trip to Hersey PA!  This has also become a December tradition.  We usually go to the hockey game the weekend of the Bear Toss where everyone brings stuffed bears and throw them onto the ice after the first goal of the game. All the bears are donated to the local children's hospital.  Unfortunately that game is the first weekend in December and we weren't sure when Johnny would be defending his dissertation so we decided to get tickets later in December.

We secretly packed the kids bags and when we got in the car we told them we were running errands (they didn't see us load the bags).  We got a reservation at the Hershey Lodge for the first time since the new water park opened.  We spent the afternoon at the waterpark and then headed to the hockey game.  We were able to see Cocoa again!  It was a great game and Reagan asked lots and lots of questions about the rules and what the players were doing.  Not only that, Cole was on the jumbotron for the Fan of the Game!  Cole and I also took a walk around the stadium to meet the service dogs.  It was really nice driving the short distance to the hotel and being able to go the waterpark the next morning.

We had a fun Christmas this year celebrating with my family at my mom and dad's with the traditional quiche, fruit soup and tea ring.  Then we had Johnny's family over this year and hosted Christmas at our house.  The kids had a great time and always love having people over.  Reagan's big ask of Santa this year was to have her room repainted and get new comforter and Cole simply wanted a new transformer.  The first time I asked what he wanted for Christmas he said, "I don't really need anything mom."  Then when I pushed he said, "Well, now that I think about it, can Santa bring me a flying hover board so I can fly around the world?" Santa didnt' bring that so we think they were back ordered. Santa also brought a new Nintendo Switch and a basketball hoop. The kids were thrilled!

We closed out the year taking the kids skiing the week after Christmas.  We haven't done that in three years so it was fun seeing them out on the slopes again.  Both really enjoyed their lesson with Two Top Adaptive Ski School at Whitetail Ski Resort and were begging to stay longer.  That was amazing given it was only 9 degrees the day we went!!  We will definitely try to take them again this season. Although Reagan asked if she can skip the lesson next time and just "go down the hill really fast."  God help us when she gets her driver's license!!

We were proud of both kids for going on the full lift (not the bunny slopes) during their lessons.  The true test will be getting Johnny and I back on the slopes.  I don't think I've been skiing since we got married 11 years ago!  Unfortunately we've been a little busy with kids, doctor's appointments and this thing called life and work.  But it's exciting thinking that the kids are now getting to the age that some of these activities will be easier for us to do as a family.  Looking forward to the future, that's for sure!

As we close out the year, I think back to the year before and acknowledge how far we have come. Last year we had 25 doctors appointments, one surgery and about 70 therapy appointments (Reagan wasn't off the wait list until May after going to Kennedy Krieger's Constraint Camp).   This year we only had 11 doctors appointments and 48 therapy appointments (not including the dentist or orthodontist) and the second year in a row with NO hospitalizations!  I looked back at my blog post at the end of 2012 and we had 108 appointments that year!  We feel so blessed that life is becoming more normal and we hope to beat our record of 2 years without any hospitalizations in 2018.

As I think about our year, I can't help but think about the loss of my God son Evan.  He truly had a sweet spirit and was very special to me and to our family.  The four kids got along so well and we always enjoyed our play dates.  This picture was taken the week before he was called to Heaven in August.  His loss was a reminder to cherish each day.  To hold every moment as sacred.  To always say I love you.  And never wait for tomorrow as it may not come.  Evan's loss left a hole in my heart comparable only to losing my own child. This poem says it well...

I thought of you with love today 
but that is nothing new.
I thought about you yesterday 
and the day before that too.
I think of you in silence 
and often speak your name
All I have are memories 
and your picture in a frame.
Your memory is my keepsake 
with which I will never part.
God has you in his keeping 
and I have you in my heart.

I hope that all our friends and family have a happy new year.  I pray for health and peace for all.  Yet I know there will be loss and there will be pain, so I pray you each have the strength to face what you must and that you embrace each day with all your heart and soul. God bless!

Saturday, December 2, 2017

Neurosurgery and Neurology Updates

Well we're closing out the year with our usual neurosurgery and neurology visits.  We met with the neurosurgeon for both kids two weeks ago.  It's always good to see Dr. Myseros and get his perspective on the latest in the world of scans and shunts.

He said Reagan looks good and although he wants to continue to see her periodically, there is nothing overly concerning.  He did say that he's surprised we haven't considered tapering her off her epilepsy medication naturally by weight to see what happens.  I'm sure that will come up again when we meet with the neurologist, but as I've shared, her scans still show significant epileptic activity so it wasn't advised.

Dr. Myseros said Cole looks good and we talked about when he should have his next scan.  He'd like to have him scanned again before our next visit in the Spring.  Although we've been on this journey for over 8 years, I am always learning new things about my kids' diagnoses.  He shared a story about a patient who hasn't seen him in 8 years and although had no symptoms he decided to have her get a CT to check the shunt function.  The scan showed the tubing was broken despite not having any symptoms.  It gave me hope to hear that she may have become shunt independent.  Although he said he would never remove of the valve in the brain (unless it's malfunctioning), he will be conducting surgery to remove the tubing in her stomach and leave her "open" for a few minutes to see if anything is draining into the peritoneal cavity.  He said it is sometimes possible for the tubing to build up a "barrier wall" that allows the fluid to drain through tissue build up so that it looks like you are shunt independent but actually there is still drainage.  Anyway, the point is that he said there are significant long term complications from all that tubing in the body and it should be removed if it's not needed.  And BAM...there's the kick to the gut needed to shift you from hope back to reality.  But we live a life knowing his rate of shunt failure is 99% in the first 10 years so this isn't a surprise.  We are very blessed that Cole hasn't had any issues and pray that continues.

On to you may remember, Cole graduated from his neurology appointments in the Spring but Reagan continues due to the epilepsy medication.  It was a good appointment and nothing new to share.  He said she looks good and is still within the therapeutic level for her medication so we decided not to increase it.  I did mention Dr. Myseros's question and he said that he believes in being more aggressive.  If she's ready to come off the medication he prefers to wean down over a 6 week period rather than coming down naturally based on weight.  He said he would like to have another EEG in the Spring before the next appointment and consider taking her off next summer.  I am definitely not going to get my hopes up, but it gives us something to look forward to.  Unfortunately, even if she appears to be seizure free they can always resurface like they did last time. It may be weeks, months or it could be years.  Being seizure free for 5 years definitely increases the chances of being able to consider coming off the medication except that the statistics are very different for cases with structural causes for the epilepsy.

Just as Cole could have a shunt malfunction any day and end up in brain surgery again, we've come to accept that Reagan will always face epileptic recurrence.  And while we so desperately want her to be independent of the medicine, I sometimes wonder if it's better to know she's medicated and safe.  The thought of letting her go swimming or climbing on a jungle gym not knowing if that will be the moment she has another seizure will bring with it another set of concerns.  And yet I worry about her being able to drive or bear children.  And although this is a long way off, and new medical developments may occur, it's hard to think about her being told she can't have her own children.   And so we continue with this thing called life and take every moment to enjoy what we have today not knowing what tomorrow will bring.

We were lucky to have a beautiful day to cut down our Christmas tree.  It's a family tradition for us to go the day after Thanksgiving.  Despite fighting over who got to pull it to the bottom of the hill, we had a great time and had a fun afternoon decorating it.  I'm very lucky Reagan loves putting on the ornaments as much as I do!  We also got their school pictures - they look so grown up!

Friday, October 27, 2017

Ophthalmology, Pediatrician, NuEyes, Read-a-Thon and Annual IEP

As we move into the Fall we have several doctor appointments that started with the Ophthalmologist, Dr. Jeffries.  We had a very good visit and I marvel at how much easier the appointments have gotten now that the kids are mature enough to follow directions and sit quietly so I can talk to the doctors.  Cole had his eyes dilated and his prescription was updated.  I am excited to share that his vision has improved slightly! Not by a lot, and we don't expect that to necessarily continue, but it was a nice surprise.  Unfortunately he is still considered legally blind, but any improvement is always welcomed. As he is able to better understand the tests we hope we will get a better idea for what he really can see.  The doctor believes the improvement was a result of the surgery that allowed better alignment, reduced shaking and from his increased ability to accommodate by adjusting his null point to see (off centering his head to get the clearest image).  One big difference with this appointment was that the doctor recommended Cole get bifocals.  What I didn't realize is that the prescription he needs causes images to get smaller.  So by adding the bifocal for reading, we can slightly increase the size of what he reads to help him see it better.

After the appointment we drove to the optometrist's office (located with the low vision specialist) to order his new glasses.  I've been wanting to get glasses without a strap for a while now, but he still tends to throw them at me when he gets mad so the durable rubber has been a very good option.  He has been wearing the Miraflex since he got his first pair at 11 months old.  Unfortunately I didn't realize how good we had it!  Finding a pair of glasses that work for Cole was VERY hard. First, he has a thick prescription which rules out any wire frames.  Then, the bifocals rule out any rectangular frames because the real estate is too small for the bifocal.  And given his prescription we can't do progressives because again, he would lose too much real estate on the lens. One thing I didn't realize was that his temples are actually pretty wide, possibly from the plagiocephaly he suffered from his extended stay in the NICU.  So many of the glasses were too tight on the temple and would push the glasses down on the nose.  After an exhaustive search and lots of attempts, we got to pick from two pair.  But we both really like them and they are working out well.  I did take him back once already to have the arms adjusted so they would stop falling on his nose.  He is adjusting well to the bifocal and seems to be happy with them.

While visiting the optometrist I spoke with the low vision specialist about our upcoming appointment with the rep from NuEyes, the visual prosthetic magnifier.  He further explained that the reason these glasses will help Cole is because we can adjust the refraction with glasses, but the tissue center of his eyes is permanently damaged.  He said that pretty much everything Cole sees is fuzzy, but when something is small, just losing a few "pixels" of an image makes it difficult to discern.  When you enlarge an image, losing a small pixel has much less of an impact because the percentage of the image that you lose is much smaller.  So the more we can magnify images for Cole, the better he will be able to see them.  We discussed the many questions I had for the rep and was glad we were able to touch base.

The following day I met with the rep from NuEyes, Kristi, and she setup a full demonstration of the glasses with Cole's TVI at the school.  We discussed models, durability, usability, and future upgrades.  Then we brought Cole into the library to try them.  He immediately went to the fish tank in the library to look at the fish.  The TVI said he had tried to look at them the previous day but of course you can't get close to a fish.  In the picture shown he went from only being able to read the first two numbers (he read the 6 as an 8 likely because it was fuzzy) to being able to read all three rows of numbers with the glasses.

Although the glasses are VERY cool (much like virtual reality) they will take some getting used to.  They are voice activated for zoom (up to 12 times) and will allow him to see more of what's going on in the classroom and have them read to him if his eyes start to fatigue.  One example is using them for group reading in the classroom.  Long term he would also be able to do internet searches.  Outside of the eduction setting, he may also be able to go games or shows and see what's going on.  Unfortunately it will be another technology to integrate into the curriculum and determine what and how it should be used.  Not to mention they are $5,995 and you probably remember he broke his cane in half the first week he had it.  The rep said The Lion's Club focuses on grants for visual disabilities so we are investigating what opportunities may be available through them.

We also kicked off our school fundraiser that day so I was able to go into the kids' classrooms and have them read to me.  I was so impressed with how much progress Cole has made this year using his CCTV.  Although it's still hard to position physical books and worksheets, he has mastered online reading on the device and that is a great option for him.

Cole also had his 7 year check up and flu shot.  Although he resisted the flu shot and had to be held down, the appointment went well and the doctor is pleased with his growth pattern.  He struggled for so long to even be ON the chart that it's nice to see an even, upward movement for height and weight and go into an appointment with no real concerns to address.

It's also IEP time for Cole which mean his school goals need to be reviewed and updated.  We had his meeting today and I have mixed feelings about the changes.  Most of his services will remain stable into the new year with the exception that his occupational therapy has been reduced to consult only (no service time).  I am slightly concerned about whether his hand writing will decline given they have worked on this a lot, but just as with private OT, his therapist feels he has made amazing progress and is no longer delayed compared to his normally developing peers.  But I know this is something we can and will work on at home to improve the clarity.  Also, the team talked about the option of the NuEyes and we decided to reinvestigate at the end of the school year.  The team is worried about integrating another technology when he's just getting proficient on the ones he has now.  Also, he struggled slightly to figure out how to use the glasses and we think a little more maturity will greatly help his ability to use them to their potential.

A lot of updates, but all good.  Next up is neurology and neurosurgery in November!

Saturday, October 14, 2017

Cole's Monster Mash - Cole Turns 7!

And just like that, 7 years have come and gone.  Cole chose a Monster Mash birthday this year and invited his 1st grade class and friends to the house for a costume party.  It was a little chaotic given I was gone all week on a business trip and got home Friday night.  On top of that Johnny was deployed to Puerto Rico helping with the disaster relief of Hurricane Maria.  But I was able to pull it together!

Within two hours of getting home from St. Louis I had most of the decorations up and the table and tableware set and ready for the next day.  I still needed to get the mums purchased and planted so the house was presentable - all my flowers died since I forgot to leave a note to water them while I was gone.  I needed to grocery shop, pick up the cake, make the balloon spider for the ceiling, make the skeleton lanterns and of course get the dry ice for the magic potion!  After getting all I could done, Reagan and I took Cole to Cheesecake Factory for his birthday dinner with my friends Vicky and Justin. It's his absolute favorite so of course we had cake and sang Happy Birthday.

The next morning we had a lot to get ready but it went smoothly.  Mums were purchased and planted.  We were visited by a beautiful memory of Kendall when a butterfly landed on one of the mums.  When we got home one of Johnny's co-workers stopped by the house to drop off a present for Cole with a balloon.  He and his wife then offer to get the dry ice for the potion - huge help!!  After they left Cole looked at me kinda sad and said, "mom, it's not fair this whole day is about me and nothing is about Kendall.  Can I send this balloon to her in Heaven?"  My sweet, sweet we wrote her a note,  he let it go and we watched as it disappeared into the beautiful blue sky.  It was a bitter sweet day holding the party on the anniversary of her loss, but I love that he was thinking about her and wanted to give her something for her birthday.  Not a day goes by that we don't think about her and wish she were here.

Overall the party was a success, but I had a lot of rowdy 7 year olds!  The kids had fun playing on the moon bounce, painting pumpkins, beating up the eyeball piƱata and running crazy in the basement.  One thing I love about our house is that we have a basement made for play.  Between the rock wall, monkey bars, air hockey, roller coaster, balance beam, see-saw and drum set with microphone for singing, there is something for everyone. For those who didn't come in costume I had lots of options for masks the kids could wear and then take home.  And of course they were able to take home the pumpkins they painted.  Cole's costume this year is the Scream character with a two layer plastic mask that releases blood when you squeeze the "heart" bulb in the costume.  I never would have imaged that two other boys from his class had the exact same costume! They thought that was pretty funny...but I doubt any of them have actually seen the movie or they wouldn't be laughing!  The kids had eye ball cake pops, chocolate covered finger pretzels, mummy hot dogs and a magic fogging punch (with dry ice).

Needless to say we were all exhausted by the end of the day and slept well!  We also celebrated Cole's birthday Sunday with my parents and sister and then again on Monday with Johnny's parents.  So it was a four day celebration!  It was hard not having Daddy there, but we are so proud of the work he is doing to help the people in Puerto Rico and hope he will be home soon!